Monday, February 13, 2012

Last week at our home group bible study, Charlie mentioned the best way to make pork for tacos. The next day pork shoulder was on sale for 1.19 so I took it as a sign from God to make pulled pork. ;)

I tried to remember what he said, but I'm sure I forgot a few steps. I didn't have a slow cooker so as required, so I just put it in a Le Creuset pot and put it in my oven for about 5 hours on low instead while I ran appointments and errands. Came back, pulled it out, saved the liquid and shredded the meat (got rid of all the fat). Put it back in the pot with liquid, 2 jars of salsa plus some salsa we had made, tons of cumin, a finely minced onion and one whole bulb (not clove) of garlic, minced. Along with some salt, stirred it all up and put it back in the oven for another hour or so. It turned out great, but a tiny bit liquid-y (yes, I know) when we put it on tortillas. Fabulous none the less.

Again, everyone liked it but Amelia. She had a small bite of the meat and ended up eating fruit and cheese.

I haven't felt much like cooking lately, although in my mind I'm busy cooking fabulous food all the time. But when it comes right down to it, I usually have about 20 minutes to get it all going at the end of the day with the way our appointments have gone lately.

Saturday I meant to cook something really complicated and delicious but felt too tired and lazy to do it. So when I realized that dinner was about 20 minutes away, AGAIN, and Rafe was outside flying a kite with Amelia, I figured I'd better do something fast. Plus Olivia was looking at me with her sad mouth turned down, saying "ee ee ee" and signing "eat".

So I took 1/2# hamburger out of the freezer and thawed it in the microwave. I don't normally do that so I had to guess at what level to put it on and for how long. Then pulled out my trusty Le Creuset pot, sauteed some onions and celery on super high heat, threw the meat in and browned it. While it was browning, I just opened up a can of tomatoes and some corn and tossed it in along with some seasonings. Stirred it and added couple of cans of chicken stock. Brought it to a boil and thickened it with a can of refried beans. Turned out to be a big hit with Rafe and Olivia; not so much with Amelia. I think she ended up eating a cheese stick. I sprinkled a bunch of crushed tortilla chips on mine. Delish.

I love Flat Out Bread for quickie pizzas. They are quick and easy to make with the kids and my super fast lazy meal. Amelia and her little buddies will grate the cheese and pick out their ingredients from the "pizza bar". I gather a bunch of ingredients for toppings and set them in little bowls for them to choose from. I'm sure it makes them feel all fancy, even though they only ever choose pepperoni and cheese! They use a silicone basting/pastry brush to brush an open can of spaghetti sauce on the crust and then top it.

Usually Amelia and Olivia will sit in front of the oven watching it cook - very cute to watch.

This one is all mama's... most of the toppings are for the adults anyway. I keep crumbled gorgonzola in the freezer and just use it as needed. Sometimes I make a big batch of caramelized onions and use them throughout the week in pizzas, sandwiches and other goodies. And the steak was leftover!

Thursday, February 2, 2012

I'm so glad this week is almost over. All I've been doing at home is survival mode - fix breakfast, lunch and dinner for everyone and put them to bed. Lots of phone calls and I've felt like I've been in paperwork hell with all the forms I've had to (and still have to) fill out for Olivia and family.

Things were busy and going well, but I came up against a bit of a roadblock today. We need to see a Pediatric Dietitian, preferably one who specializes in obesity. The closest one to us that fits that bill and who has some knowledge of Prader Willi Syndrome lives in Atlanta. (Bailey Koch with Atlanta Pediatric Nutrition if anyone is interested) Unfortunately Tricare won't cover any dietetic services unless they are given at a MTF (Military Treatment Facility). I talked with our Tricare representative and found out that it would literally take an act of Congress in order to get those services paid for. Joe Wilson, expect to be hearing from me soon!

In the meantime, we tried to find a way around that by going to the dietitian at the Naval Hospital and asking her to refer us to Bailey, hoping that once it was acknowledged that she couldn't help us it would get paid for. She agreed literally within the first 3 minutes that it would be best for us to go there and spent the better part of an hour trying to figure out a way for it to happen. It still came down to this...NO. The only option we had was finding a MTF anywhere in the US with the expertise to deal with that and then go there to get services. Travel not included. She is currently looking into it, but I doubt she will find anyone.

After coming to that conclusion, she gave me materials she gathered from the web about low calorie low carb diets and told me that literally the only thing she could find was that calories needed to be restricted between 33% and 70%. She said it was such a huge range, divided the difference and said we should restrict her calories 50%. I know she meant well, but it was probably one of the things that bothered me the most about the visit. She was giving me her best GUESS. On a major issue. I could have done that myself. It's not her fault at all, but I was bothered by that being my only option - again not her fault. Cut Livi's calories to 50% across the board and see if she gains weight. If she does, cut them again. Really? How do I make sure that she is getting all the nutrients for her growing brain? I asked if there was any way to have a test run to find out what nutrients her body was actually absorbing and she didn't know of anything. I know there is something out there; I just read about it but can't remember where.

We could pay for it out of pocket, but over the years it will add up to quite a bit of money and I really feel that since it's such a big part of the medical puzzle, it should be paid for. So I'm going to try several different avenues, including contacting a company I used when I was a Chef, to try and find solutions for this problem. One thing I know for sure - the military has a waiver for just about anything if you can figure out how to do it. So I'm hoping that I can find a way to get a waiver from Tricare somehow.

Next Monday is our visit to Dr. Miller in Florida. I don't feel prepared for this visit. I have so many questions in my head but can't seem to access them anymore after this week of discussing so many details related to Olivia.

I am very glad to be going to see someone this week who is the expert on PWS and who will be answering my questions and not the other way around as it has been all week. No matter which doctor or service I talk to, I'm the one educating them. Not complaining (too much), I understand why, but I'm weary. Very weary.

Wednesday, February 1, 2012

It's only Wednesday and for some reason it's been feeling like Friday since Tuesday. Since Monday we've had:

Appointments for Olivia -

2 Physical Therapy

2 Occupational Therapy

2 Speech Therapy

2 Pediatrician visits

1 Orthotics visit (it's the third in 4 weeks)

1 SNERT assessment (Special Needs Evaluation Review Team)

1 CDC paperwork review

1 EFMP visit for housing referral and rating for Olivia

Events for Amelia -

2 playdates with friends

1 Parent night for rising first graders at EC Montessori

1 Dr. visit

2 pickups from school by me

1 dinner out at Taco Bell for stars earned

1 trip to Walmart for tissue paper(to make crafts) for stars earned

Events for me -

1 Home group - small group bible study in a friend's home

1 Pampered Chef party (THE highlight of my week so far)

That's not even counting the conversations I've had with Naval Hospital and insurance people this week. We only have 4 more appointments, and a playdate this week. I'm dropping Olivia off at the CDC and trying to actually get something done at home the last two days of this week. I think Rafe sometimes wonders what I do all day when he comes home and the house looks pretty much the same. I do too, and then I look at a list like this and remember why the toys are still in exactly the same place as they were when the kids got done playing with them this morning.

My Favorite Post

"We are each of usANGELSwith only one wing and we can only fly byEMBRACING EACH OTHER "-Lucian de Crescenzo

About Us

It's three years later... we've been through another deployment, several TAD months of training and preparing for our 5th deployment (and the second YEAR long deployment). We've PCS'd to North Carolina where we met old friends from past duty stations and made new ones on our Marine Corps journey. And we're still unpacking, yet again!

6 weeks after my husband returned, we had the unexpected surprise of our daughter arriving almost 2.5 months early with a lot of post birth complications. Now we're getting used to our new "normal".

My husband just returned from what I now consider to be our 17 month deployment (if you count the months of special training in another city before hand) and we've unpacked and begun planning for our next move and... you guessed it... packing up again.

Ok, we WERE preparing for the deployment... now we're living it. And I'm more unpacked than I was!

We're preparing for a year long deployment, living in one city and traveling to another where my husband is in training for the next few months before he leaves. We've yet to fully unpack anywhere! This blog is for my husband, family and friends... and myself, so I can remember where I'm at! :)

PEACEit does not mean to be in a place where there is no noise, trouble or hard work. it means to be in the midst of those things and still be calm in your heart.(unknown)

Amelia in Azaleas

"I believe it to be a great mistake to present Christianity as something charming and popular with no offense in it....Wecannot blink at the fact that gentle Jesus meek and mild was so stiff in his opinions and so inflammatory in his language that he was thrown out of church, stoned, hunted from place to place, and finally gibbeted as a firebrand and a public danger. Whatever his peace was, it was not the peace of an amiable indifference."--Dorothy Sayers